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Rough visit yesterday

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Hi Everyone,

Had my 3 month check up with my onc yesterday and it was not good. My labs looked okay- just two of the numbers were wacky. But what she's concerned about is a stomach biopsy I had done. They found bad cells there and now she thinks that my diarrhea since December could be related to my disease. (I was diagnosed and treated for C-Diff but still have issues)So yesterday I had a cat scan with contrast of my chest,abdomen, and pelvis. She thinks there may be disease in my small intestine. So now I wait as they look at biopsy slides again and cat results.

I know that this disease is chronic and I know we can expect it's return but good grief I just finished treatment in September. This seems too soon. (As if I have control over this!)

Darn it!! I am just sad, disappointed, depressed and mad. Ugh. My daughter is getting married in October. I don't have time for cancer right now!

Thanks for listening- you guys are THE BEST.

Love,
Donna

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Donna,
I am so sorry that you received disapointing news. Some days it's so hard to catch a break. I know the feeling well...Ugh.
I hope and pray that it will turn out to be 'just' an infection and that more antibiotics we be your next step.
I'll be keeping you in my thoughts, along with Sue..
Peaceful healing
Lisha

yesyes2
Posts: 592
Joined: Jul 2009

Oh Donna,

Your post really caught me off guard, first words were, Oh S#&*, what is going on. Some one certainly has to catch a break. Like Lisha said, lets hope and pray it's an infection and with the right antibiotics they can clear it up. My first time round I was treated with Rituxan only, 4 rounds and than every 8 weeks maintenance. I stayed in remission for less than 1 year so not very long. This time I had RCHOP and have been in remission for 14 months and hopfully holding. So if the beast is back there are treatment options for you, but we have no need to go there at this time.

Sending hugs, good wishes and blessings.

Love,
Leslie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Donna,
It is heck getting news like that with nobody really knowing what is actually going on.The fisrt thing they think is the disease has returned,but they really haven't examined the results yet. I am not putting the Drs. down,but I think they should be a little more conservative until they are absolutely positive with what they are saying. It really leaves you in the dark until all the facts are on the table. Now you have to wait. We will be here waiting with you. John(FNHL-1-4A-5/10)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Unfortunately Donna, I can relate too damn well. I finished chemo in August 2006 and it was back by December of the same year, and you're right it is too short.

But take heart honey, there are tricks and treats they can do. Maybe rituxan since it's not so toxic to your body?

Just know I am there thinking with you!

Take Care,
Beth

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Donna - how disappointing this news must have been for you - so very sorry. AND with a daughter's wedding to plan and attend! Just keep your thoughts on that fun time and somehow you'll get through the rest between now and then. I agree - that's not a long enough remission, but I haven't reached my first one yet so can feel for you.

I sent a speciman to the lab today to be checked for C-Diff - my diarrhea has been dreadful since starting Treanda chemo in November. Wondering if that's causing it or the Rituxan. Last Thurs. I had 22 bowel movements - can't even leave the house like that! Today my Oncy. made a referral to a Gastro Dr. 30 miles away who has worked with chemo patients and hopes he can be of help since the 3 prescriptions I'm taking are doing no good. Has yours been that bad?

You're in my thoughts and prayers - keep us posted and we all feel your pain - Fondly, Fran

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Fran,
I have had diarrhea since the first week of December, in varying degrees. Was treated with Rituxan only in August-September. Then got 2 upper resp. infections and had antibiotics. My gastro said that the antibiotics for the upper resp. killed the good bacteria and allowed the bad to florish. Two weeks of Flagyl were useless. 3.5 months of Vancomycin have not done it either. Had one positive C-Diff test in Dec. One negativeC-diff test in March. Still have diarrhea so now waiting for yet another C-diff test along with a lot of others (e-coli, parasites...etc) as well as the onc's testing ... I HAVE had as many movements as 15 or so when it was at it's peak. Now it/s 2-5 but can be nasty and explosive.(sorry for being so specific..) I have had to stop all dairy and anything that might have a drop of oil or tomato on it. I am eating bland, bland. Oatmeal, rice, etc. I have tried more normal food with terrible results. I also take a probiotic. Don't take any immodium until they are sure that you don't have C-Diff. It will make C-Diff worse..

Since we both had Rituxan... makes you wonder doesn't it?? I don't know about you but my Onc will not admit that Rituxan can cause any side effects. Drives me nuts because I KNOW that's why I lost a lot of hair and I now have a very high forehead and thin hair. (never had it before)

Good luck with the gastro- keep me posted. It's awful. I time my eating and going out. Have lost 15 pounds so far.

Love,
Donna

Michele23
Posts: 168
Joined: Mar 2011

Hi Donna,I never got diarrhea once from Rituxan and have had over 40 treatments.If anything I put on weight.So strange how we are all affected so differently.Do have Atrial Fib and heart doc thinks its Rituxan related.Are you able to eat yogurt?I know oatmeal cereal cleans me out.Hubby has colon problems as did my mother{who is passed}so I was always looking up recipes that would not aggravate their conditions.Feel so bad for you and Fran dealing with the extra issues,no one needs this.Hope they soon get to the source of the problem.Take care,Michele Dx95FNHL3

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

HI Donna - second negative test came back this week - no C-Diff. My Oncy. is trying two weeks of Flagyl (which didn't work for you) until I can see the new Gastro Dr. with experience in treating chemo caused diahrrea. So far all it's done is make my face red but will keep trying. I love Italian food and can't imagine life without tomatoes or oil OR dairy, but will ask about those foods. If they're making it worse, will just have to give them up. Wish I weren't such a foodie - my husband could care less about what he eats but I'm the opposite and it's very important to me - I love the shopping, preparing, eating, etc. but that may come to a hault if the Dr. says so.

Hope your NYC wedding shopping weekend was a blast with your girls - the best R&R and far better than any meds is time with your kids and family! Hang in there - Fondly, Fran

miss maggie
Posts: 929
Joined: Mar 2010

Dear Fran,

Sorry to hear about the diahrrea.

I was wondering, would tomatoes and dairy make your face red? Hopefully that's not the case.
I suppose a doctor mentioned it?

I too love Italian food and dairy. The only time I skip Italian food is in the summer months.
Much too heavy for me to eat when it's hot outside. The restaurant is air conditioned, but going outside after eating Italian food. I can eat dairy all year long.

The very best with your visit with the gastro doctor. When is your appointment?

Love Maggie

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

So sorry to hear that, October is a long way off,think only the best! Vinny

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

You all are so special to me. Thank you for the words and love. I am hanging... and staying busy and distracted!! Tomorrow I am meeting my daughter in NYC - we have an appointment at the J.Crew bridal salon (who knew??) to get her dress. So I will go with tissues in hand (for a completely different reason than the last two days) and have a fun girls weekend.

I do not have time for this!! But I will beat it if the "beast" is back!!

Love and hugs to all!! Will keep you posted. I also keep you all in my prayers.

Love,
Donna

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

It seems like yesterday I saw your post "REMISSION". Jan 2011 I was going to mention anti-biotics, but I read your post stating "killing the good bacteria". My DX all started in my abdomen area also. Small bowel perforating and all the goodies floating around in my body.. I was treated for so long at the hospital with anti-biotics. I almost died. It had to be done.

There is never a good time for maybe worrisome news. Especially with your daughter getting married. Remember Tom, everything turned out OK.

Love, prayers, and hugs to you also. Let the angels watch over you and give you strength.

All my love Maggie

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Donna,

Yes your news sucks - I know how scary this has been for you. Take one day at a time and hope for the best and enjoy every moment you have for planning your daughter's wedding. How special that event is!!

Hugs,
Liz

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Donna I am sorry that you are having so much trouble . I am on Rituxin and just had my seventh treatment. The day after it blocks me up terrible so this time I took 3 laxitives and 2 soft stools. Needless to say I shouldn't have taken the max dose. NO blockage:) I hope the problem is found soon and you can just thnik of your daughter's wedding and this wonderful happy time. ithink back when our Jennifer got married and how I will never forget those precious moments.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Oh Joanie sorry to hear about the overdose of laxatives and stool softners, but I will admit it made me chuckle. I've done the same thing.

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Hi all,

Had the best time in NYC!!! My daughter found the perfect dress - we had that moment. The tears and hugs and pictures... it was exactly what we needed. Boy is she going to be a beautiful bride!!

Of course we went to dinner to celebrate and I ended up in the bathroom until 3am because if I eat anything but gruel it runs right through me... So my darn disease just wanted to remind me that it's still hanging around I guess. Still losing weight. C-Diff and all other tests of that type are negative so now it's in the onc's hands. But I am too busy planning an October wedding to let it get me down..

Waiting for the Cat scan results and my appt on May 10. Boy is that a long way off. Think I'll call her when I get the results so we can talk about it, if she doesn't call me first.

Thanks to all for the love and concern. Will keep you posted.

Donna

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Donna,
Aww...I'm so glad you got to have that special "moment" with your daughter. So sorry about the bathroom issues after eating diner. Boy...May 10th is definetely a long ways off..I'd be calling as soon as you get the CT results. I get mine tomorrow at 10:30 when I see my Onc. Treasure your memories and "YES"...focus on the wedding...those thoughts will help push the bad thoughts to the back of the line. Take care dear...Love, Sue (FNHL-2-3A-6/10)

yesyes2
Posts: 592
Joined: Jul 2009

Hi Donna,

You brought a tear to my eyes just thinking about the wonderful bonding and pure joy you and your daughter had this weekend. Glad that everything else on your plate didn't interfer. You are really a trooper and I'm glad you have this wonderful wedding to help plan and look forward to. Must say I'm partial because I married in October and it's my birthday month. October is truely a beautiful time of year.

I am sorry you have to wait until May 10 to see your doctor. That's way to far away. Especially with all your stomach and intestine problems. Sure hope you can get that moved up.

Sending you lots of prayers and love.
Leslie

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Weddings are such a wonderful time when things go smoothly. I'm glad you had such a wonderful day!

I'm sorry to hear the night didn't go well. I wonder is there not any way your doctor can help you get a sooner appointment? Just seems crazy when your symptoms are so bad. I mean can they not get you on a cancellation list or something?

I am keeping you in my prayers and I hope your appointment gets moved up!

Take Care,
Beth

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Hi all,

Thank you for your love and support for the wedding fun !! and for the recent medical concerns.

I am going to call the doc as soon as I get the Cat results to discuss - great suggestion Sue. And I'm going to listen to all of you and try to get an earlier appt. Don't know if that will happen but I'm going to give it a try...

Love to all! Let's make it a great week. :)

Donna

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

I have my appointment with the oncologist may 9. I too am in remission as of Jan
2011. For me, it seems like around the corner. I dread this visit, even though I
feel ok. Maybe that's not enough.

I am so glad you enjoyed your visit in NYC. Sorry you spent so much time in the bathroom. Hmmm, did you go to the famous store in
Brooklyn for your daughter's dress? I forgot the name. The store is always on cable
TLC.

You bet, I and all are concerned. It seems like yesterday you were so happy. Maybe everything
will turn out OK<

Love Maggie

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Hi All,

I have lymphoma in my stomach and in a groin lymph node. Nothing definitive in the small intestine but she wants a capsule endoscopy to be sure. Wants me to then get a second opinion at Sloan Kettering again to be sure if treatment is needed or not. Darn! So now more testing, waiting and uncertainty. Still have the diarrhea.

Does anyone out there have rib pain?? That's another area of concern. I still have lymphoma in my bone marrow, but she doesn't think that would cause this horrible rib pain but she didn't sound sure.

Thanks for all the love and support. I'm a mess. I want this to be done already- I think I'm just exhausted.

Love,
Donna

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Donna,
I'm so sorry to hear this news. Lets hope the testing and any treatments you might need will be under control by the time the wedding gets here in Oct. Maybe they will go with the "watch and wait". I had some rib pain before the chemo shrunk the tumors in my abdomen. Is it possible the lymphoma in your stomach could be causing the rib pain?? I'll keep you in my prayers Donna...my heart hurts with you having to start the testing again. We are here for you dear...always! Love...Sue (FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

What can I say? As everyone else, so sorry. Why do you or anyone else
have to hear those words. Especially since hearing great news a few
months prior.

I have a quesiton. Does the doctors consider your DX Malt Lymphoma? Only because
the lymphoma is in the stomach?

Since I didn't have time, I will look up capsule endioscopy.

Oh yes, feeling exhausted and being a mess right now is very normal. Hopefully as the
days go by, you will feel better.

You have my support, love, and prayers. Love Maggie

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Maggie,

Thank you and everyone for the love and support.

I have Marginal Zone NHL and in addition I now also have Malt type in my stomach. It's a 2 for 1 special! haha Bad joke.

Waiting to get the capsule endoscopy appt and waiting for Sloan Kettering to call me with an appt. Wait,wait,wait.

But thank you!!! You all make me feel better always.

Love,
Donna

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Oh Donna, I'm sorry to hear this, but at least they seem to be staying on top of it. I know the extra testing and waiting is the pits though. I was hoping for better news for you.

I don't have lymphoma of the stomach, but when I was first diagnosed I had MALT and Lymphoplasmacytic Lymphoma (both on the rare side)

So think of it this way...we are rare jewels and we can be princesses all we want. You'll dress up so pretty for the wedding you and the bride will be shining together.

Love you lady,
Take care,
Beth

miss maggie
Posts: 929
Joined: Mar 2010

Dear Beth,

I have been keeping up with all your posts. I wrote Lisha, "I have added her name to
the people I admire most. Top 10. You too are on the list.

I am so glad you have such a great support system all around you.

I forgot to mention, your last paragragh to Donna was the nicest, and sweetest words.
It brought tears to my eyes.

You are a jewel, Love Maggie

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